Our Journey (Pt. 1 - Kidney Disease)
WARNING: This will be a long post. I haven't even written it, yet, but I know that there is so much that I need to share.
In the summer of 2016, we had already been talking about having kids. We partly felt ready, but we were also still living in an apartment and I knew I wasn't at a job I was going to be at forever. As we talked, we would always try to plan when we should try to have a baby. We quickly realized that this was not how that was going to work. First, there was always something that made us say, "Well, is that good timing?" There would be a wedding coming up that we were in, or a big vacation we had planned, that made us wonder if that was a sign we should wait. Second, we started seeing others around us have difficulty with fertility, and we knew that this was not something we could plan perfectly, anyway.
In November 2016, Dan was fighting some weird type of flu. He would wake up each morning, get sick to his stomach, feel kind of lethargic, but then get to feeling better throughout the day. After a few days, I told him he needed to go to the doctor. Neither one of us like going to the doctor, so it was weird for me to even suggest it. Dan tried to suggest we wait another day or so, but I got him talked into it. He called on Tuesday morning, November 15. I decided that I would come home early from work to go to the doctor with him. Looking back, I'm really not sure why I decided to go, but I am glad that I did and I know that God put that on my heart. He talked to the doctor about the symptoms, we joked about him being pregnant since it seemed to be morning sickness, and the doctor thought maybe he had an acid build up or something. He was going to prescribe Dan with a strong antacid. Right before we left, the doctor asked, "Have you lost any weight recently?" Dan was kind of going to shrug it off, but I spoke up and told him that he had lost quite a bit of weight recently. The doctor looked back, and saw in his charts that this was true, and decided to order some blood tests. Dan went straight to the lab and had the blood work, and then he left to go coach a basketball game that night. I stopped and got his medicine and we went about our lives.
We both, of course, went to work the next day. The doctor hadn't seemed too worried, and Dan had some medicine to try. However, first thing that morning, Dan called me and said that he had gotten a call about his blood work already. They said something appeared to be wrong with his kidneys, but they didn't really tell him much, just that they would call back later to let him know what needed to be done. Naturally, he was pretty worried, and I was very concerned. I remember crying in the library at school with some of the teachers, but we all figured I was probably overreacting because there were so many things that could be wrong.
A couple hours later, I get a call (honestly, maybe even a text) from Dan while I was in the middle of class that he was heading to the ER. I ran out of my classroom and grabbed another teacher, almost in tears, to ask her to watch my class because I needed to make some phone calls. I called Dan to find out what was going on, and he had gotten a call that he needed to go straight to the ER and that a doctor would be meeting him there. Of course, he was a nervous wreck, driving himself to the ER. (As a side note, this was also the ONE day that he had forgotten his wallet at home and didn't have an ID or insurance card. It was a pretty easy fix, because we lived in the complex where my dad worked, so I called Dad to go get his wallet and meet him at the ER.) Also, matching our pattern of not having anything prepared, we had carpooled to work that morning, meaning Dan had our car and I was stuck in Middletown without transportation. I called my mom and told her I'd get a ride to Springfield, I just wanted her to meet me to take me to the ER to meet Dan. Luckily, my boss did not mind driving me to Springfield at all, so we all got to the ER quickly.
I know my parents and Dan's parents got there right away, along with us, but we had to sit and wait in the ER for at least a couple hours before he went back. We started to relax, just slightly, because we figured things couldn't be too bad if they were making us wait this long. When Dan finally went back, he and I went back together while our family and friends who had come waited in the waiting room. We got back there and they got Dan settled into his bay and we talked about how they would order him lunch because we had missed that. The ER doctor came in and asked why we were there, and we were trying to explain that we weren't really sure. Then, Dr. Garg came in. We didn't know him at the time, but he said he was a nephrologist (luckily he also said that that was a kidney doctor) and he would be right with us. Pretty soon he came back in and told us that you don't want to be friends with a nephrologist, but that we were going to be. He asked what we knew about Dan's kidney failure. He asked what we knew about his anemia. He asked what we knew about Dan's high blood pressure. We. Were. Shocked. We didn't know about any of those things. We thought Dan had the flu.
He handed me a Kleenex box and explained that Dan's kidneys were shutting down. He explained that his creatinine was supposed to be around 1 or under 1 and Dan's was at 14. He said it wasn't a record, but it was pretty bad. He said that sometimes people can have temporary kidney failure because of other things, even as simple as dehydration. He said that we could hope that it was something like that, but that we needed to be prepared that that was unlikely. He said anemia and high blood pressure also area very common with chronic kidney disease, so this was most likely not something that was going to reverse. After that, the conversation gets a little blurry. We didn't know anything about kidney disease, so when we heard Dan had organs shutting down, we thought he was dying.
Dr. Garg continued explaining that we needed to plan to be in the hospital for a few days. They were going to run tests, biopsy, figure out what was going on. Then, he started talking about dialysis and transplants, and he told us, we could choose not to treat this, but it would result in death. I think this was the point that I realized we needed someone else in there hearing this. I asked if I could get Dan's parents so they could hear the rest. He was so kind, and let me go get them and then explained everything to us again. I cannot imagine our families fears when I walked back out to the waiting room with tears streaming down my face to tell his parents that we needed them back there.
Once we finished meeting with Dr. Garg, I tried to get busy taking care of things. I went out and took our family and friends outside because I didn't want to try and explain this all through tears in front of a bunch of strangers. We cried together and talked about what needed to be done. What we needed to go get. Who needed to be called. We started praying very hard.
Dan spent 5 days in the hospital that year and came home on his 27th birthday. During those 5 days in the hospital, he had a kidney biopsy, a blood transfusion, a surgery to place a temporary catheter, and began dialysis. We. Struggled. We struggled to accept what was happening, to understand, to deal, to share. It was hard. I didn't want to leave Dan, but I also didn't want to cry in front of him, so I'd go for walks just to find somewhere to cry and let it out. Beginning dialysis is very tough on your body, so I watched him appear to get better, only to get very sick again.
As we began to adjust to a new routine, Dan was going to dialysis in clinic 3 days a week. Eventually he went back to work, but then went straight to dialysis after work for 3-4 hours. He was exhausted. We knew that over Christmas break, we would be trained to do dialysis at home, but that first meant another surgery to place a more permanent catheter for peritoneal dialysis.
This is when we started to talk about having kids again. I remember Dan telling me after he was in the hospital, that he did not want to wait to try and have kids. He had realized during all this that life is so precious and that if we wanted kids, we shouldn't wait for anything. Of course, we had to wait until he was a little healthier, but in January of 2017, we started trying.
In the summer of 2016, we had already been talking about having kids. We partly felt ready, but we were also still living in an apartment and I knew I wasn't at a job I was going to be at forever. As we talked, we would always try to plan when we should try to have a baby. We quickly realized that this was not how that was going to work. First, there was always something that made us say, "Well, is that good timing?" There would be a wedding coming up that we were in, or a big vacation we had planned, that made us wonder if that was a sign we should wait. Second, we started seeing others around us have difficulty with fertility, and we knew that this was not something we could plan perfectly, anyway.
In November 2016, Dan was fighting some weird type of flu. He would wake up each morning, get sick to his stomach, feel kind of lethargic, but then get to feeling better throughout the day. After a few days, I told him he needed to go to the doctor. Neither one of us like going to the doctor, so it was weird for me to even suggest it. Dan tried to suggest we wait another day or so, but I got him talked into it. He called on Tuesday morning, November 15. I decided that I would come home early from work to go to the doctor with him. Looking back, I'm really not sure why I decided to go, but I am glad that I did and I know that God put that on my heart. He talked to the doctor about the symptoms, we joked about him being pregnant since it seemed to be morning sickness, and the doctor thought maybe he had an acid build up or something. He was going to prescribe Dan with a strong antacid. Right before we left, the doctor asked, "Have you lost any weight recently?" Dan was kind of going to shrug it off, but I spoke up and told him that he had lost quite a bit of weight recently. The doctor looked back, and saw in his charts that this was true, and decided to order some blood tests. Dan went straight to the lab and had the blood work, and then he left to go coach a basketball game that night. I stopped and got his medicine and we went about our lives.
We both, of course, went to work the next day. The doctor hadn't seemed too worried, and Dan had some medicine to try. However, first thing that morning, Dan called me and said that he had gotten a call about his blood work already. They said something appeared to be wrong with his kidneys, but they didn't really tell him much, just that they would call back later to let him know what needed to be done. Naturally, he was pretty worried, and I was very concerned. I remember crying in the library at school with some of the teachers, but we all figured I was probably overreacting because there were so many things that could be wrong.
A couple hours later, I get a call (honestly, maybe even a text) from Dan while I was in the middle of class that he was heading to the ER. I ran out of my classroom and grabbed another teacher, almost in tears, to ask her to watch my class because I needed to make some phone calls. I called Dan to find out what was going on, and he had gotten a call that he needed to go straight to the ER and that a doctor would be meeting him there. Of course, he was a nervous wreck, driving himself to the ER. (As a side note, this was also the ONE day that he had forgotten his wallet at home and didn't have an ID or insurance card. It was a pretty easy fix, because we lived in the complex where my dad worked, so I called Dad to go get his wallet and meet him at the ER.) Also, matching our pattern of not having anything prepared, we had carpooled to work that morning, meaning Dan had our car and I was stuck in Middletown without transportation. I called my mom and told her I'd get a ride to Springfield, I just wanted her to meet me to take me to the ER to meet Dan. Luckily, my boss did not mind driving me to Springfield at all, so we all got to the ER quickly.
I know my parents and Dan's parents got there right away, along with us, but we had to sit and wait in the ER for at least a couple hours before he went back. We started to relax, just slightly, because we figured things couldn't be too bad if they were making us wait this long. When Dan finally went back, he and I went back together while our family and friends who had come waited in the waiting room. We got back there and they got Dan settled into his bay and we talked about how they would order him lunch because we had missed that. The ER doctor came in and asked why we were there, and we were trying to explain that we weren't really sure. Then, Dr. Garg came in. We didn't know him at the time, but he said he was a nephrologist (luckily he also said that that was a kidney doctor) and he would be right with us. Pretty soon he came back in and told us that you don't want to be friends with a nephrologist, but that we were going to be. He asked what we knew about Dan's kidney failure. He asked what we knew about his anemia. He asked what we knew about Dan's high blood pressure. We. Were. Shocked. We didn't know about any of those things. We thought Dan had the flu.
He handed me a Kleenex box and explained that Dan's kidneys were shutting down. He explained that his creatinine was supposed to be around 1 or under 1 and Dan's was at 14. He said it wasn't a record, but it was pretty bad. He said that sometimes people can have temporary kidney failure because of other things, even as simple as dehydration. He said that we could hope that it was something like that, but that we needed to be prepared that that was unlikely. He said anemia and high blood pressure also area very common with chronic kidney disease, so this was most likely not something that was going to reverse. After that, the conversation gets a little blurry. We didn't know anything about kidney disease, so when we heard Dan had organs shutting down, we thought he was dying.
Dr. Garg continued explaining that we needed to plan to be in the hospital for a few days. They were going to run tests, biopsy, figure out what was going on. Then, he started talking about dialysis and transplants, and he told us, we could choose not to treat this, but it would result in death. I think this was the point that I realized we needed someone else in there hearing this. I asked if I could get Dan's parents so they could hear the rest. He was so kind, and let me go get them and then explained everything to us again. I cannot imagine our families fears when I walked back out to the waiting room with tears streaming down my face to tell his parents that we needed them back there.
Once we finished meeting with Dr. Garg, I tried to get busy taking care of things. I went out and took our family and friends outside because I didn't want to try and explain this all through tears in front of a bunch of strangers. We cried together and talked about what needed to be done. What we needed to go get. Who needed to be called. We started praying very hard.
Dan spent 5 days in the hospital that year and came home on his 27th birthday. During those 5 days in the hospital, he had a kidney biopsy, a blood transfusion, a surgery to place a temporary catheter, and began dialysis. We. Struggled. We struggled to accept what was happening, to understand, to deal, to share. It was hard. I didn't want to leave Dan, but I also didn't want to cry in front of him, so I'd go for walks just to find somewhere to cry and let it out. Beginning dialysis is very tough on your body, so I watched him appear to get better, only to get very sick again.
As we began to adjust to a new routine, Dan was going to dialysis in clinic 3 days a week. Eventually he went back to work, but then went straight to dialysis after work for 3-4 hours. He was exhausted. We knew that over Christmas break, we would be trained to do dialysis at home, but that first meant another surgery to place a more permanent catheter for peritoneal dialysis.
This is when we started to talk about having kids again. I remember Dan telling me after he was in the hospital, that he did not want to wait to try and have kids. He had realized during all this that life is so precious and that if we wanted kids, we shouldn't wait for anything. Of course, we had to wait until he was a little healthier, but in January of 2017, we started trying.
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